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We've been going through an exceptionally difficult time with Boo lately. He seems to be reacting poorly to the increase in his meds.
The medication that was supposed to decrease his anxiety has increased it and turned it into paranoia instead of just plain ol anxiety.
I have a call into Dr. S and hopefully will hear back from him tomorrow.
Please stay tuned for updates.....
To anyone who visits my blog, I just want to wish you all a very Merry Christmas and a healthy and peaceful New Year!!!!
We have had our challenges this year but it only takes a minute to sit back and think of how blessed we are!
We have a roof over our heads, food in our fridge, a job and 4 beautiful children! I am so grateful for my husband and the hard work he does. He is my rock!
I pray this next year is filled with healing for my sons and peace for our family. I pray this for all parents with special needs children! May God bless and keep you all! Merry Merry Christmas!!!
So, Boo had an appt. with his Dr. up at UCLA yesterday. I had my questions and my notes ready. I packed a small snack for Boo and Rich had the other kids covered as far as dinner and childcare.
We were on the road by 3:30 for his 5pm appt. I thought we were doing really well.
The traffic came to a standstill about 3 miles from our exit. Thankfully, Boo was asleep and didn't have to endure the 2 hour drive! That's right! It took us 2 hours to get there. We were 3o minutes late and I was a basket case!
I pulled up to the loading zone and ran in to let them know we were there but still had to park. When I walked in, the receptionist said "Don't worry....see all these people here....they are all waiting for Dr. S too!"
We parked the car and Boo informed us that he had an accident while he was sleeping. He was very upset and did not want anyone to see him nor did he want to wear wet pants! I assured him I must have something in the trunk (remembering I had put a box for Goodwill back there). Well, it turns out they were all my clothes! Then I had the brilliant idea to cut the lining out of his wet pants (They were double sided). All I had to use for a tool were Rich's keys. All I succeeded in doing was ripping the inside of the pants and making them more difficult to wear! I had to think quick and came up with the idea to have him put a pair of my pj bottoms on under his wet pants so he wouldn't feel the wet. He agreed to this and off we went to see Dr. S.
When we walked into the office, I could tell by the expressions on the other parent's faces that they had been waiting a long time! I asked one mother what time her appt was and she said it was at 3! A few other parents chimed in with their appt times and apparently there were 5 patients ahead of us. I quickly struck up a conversation with a mom who's son was trying to get Boo to play with him. Boo took to the corner and decided to hiss at all the other kids who came close to him. Ironically, all of these children were a lot like Boo. I can spot Autism and ADHD a mile away now!
As the mom of the little boy and I got to talking, another family joined the conversation. I had shared that we came from LB to see Dr. S. These families came from Lancaster and Valencia! We all agreed that even though we wait for hours to see Dr. S, it's worth it. The reason he is always late for his appts, is because he takes as much time with his patients as they need. He also works at the psychiatric hospital adjacent to his office so he is usually there when he is paged that he has patients to see.
We were the last people to see Dr. S. He called us back at 8pm. He spent an hour and a half with us discussing Boo. We discussed recent studies and findings on medication. We discussed the multiple diagnoses that Boo has. He believes that Boo is very distressed. Boo's little brain has so much damage from so many different things that it's nearly impossible to sort out what percentage of his challenges come from which diagnosis. He is truly a puzzle!
We were advised to get another pediatric neuro and also a ped. cardiologist. Boo had an enlarged heart as a baby and now that he is on some pretty strong meds, he needs to be followed. We need to see the Neuro to make sure he isn't having seizure activity. 10% of children with autism, have seizures.
The last thing Dr. S said to me as I was walking out was "I'm sorry we haven't been more successful at helping Boo so far". I just wanted to lay down on that floor and bawl like a baby.
I have one of the best pediatric psychiatrists around treating my son and even HE can't help him.
We were certain that we would see an improvement in Boo by now. I have an amazing little boy under all the layers of diagnoses that just wants to live and love but he can't. Children are supposed to be carefree! They are supposed to play and learn and make friends. My Boo spends his days in a rigid state. He is full of fear and anger. He is obsessive and impulsive and he hates himself for that.
So tonight we try a new medication. This one is supposed to help him sleep. It is a heart medication that lowers blood pressure but it is used as a sedative. All we can do is take it one moment at a time. Oh and by the way....we got home at 10pm last night.
(I have not forgotten my book promise. It's coming soon!)
I was supposed to update sooner so I apologize for anyone who has been waiting for my feedback from The Explosive Child. I haven't finished it yet but am almost done. There is tons of great info in this book and it's almost too much to take in right away.
We've also had a busy week.
I'll be back at some point this weekend to give a proper update :)
(In the meantime, please check out my dear friend's blog raisingreid.blogspot.com This family needs prayer right now for their little guy, Reid, who has just undergone heart surgery and may be facing another one soon)
